title: Are they really lost? "true" status and reasons for treatment discontinuation among HIV infected patients on antiretroviral therapy considered lost to follow up in Urban Malawi.
abstract: BACKGROUND
  Patients who are lost to follow-up (LTFU) while on antiretroviral therapy (ART) pose challenges to the long-term success of ART programs. We describe the extent to which patients considered LTFU are misclassified as true disengagement from care when they are still alive on ART and explain reasons for ART discontinuation using our active tracing program to further improve ART retention programs and policies.
  
  
  METHODS
  We identified adult ART patients who missed clinic appointment by more than 3 weeks between January 2006 and December 2010, assuming that such patients would miss their doses of antiretroviral drugs. Patients considered LTFU who consented during ART registration were traced by phone or home visits; true ART status after tracing was documented. Reasons for ART discontinuation were also recorded for those who stopped ART.
  
  
  RESULTS
  Of the 4,560 suspected LTFU cases, 1,384 (30%) could not be traced. Of the 3,176 successfully traced patients, 952 (30%) were dead and 2,224 (70%) were alive, of which 2,183 (99.5%) started ART according to phone-based self-reports or physical verification during in-person interviews. Of those who started ART, 957 (44%) stopped ART and 1,226 (56%) reported still taking ART at the time of interview by sourcing drugs from another clinic, using alternative ART sources or making brief ART interruptions. Among 940 cases with reasons for ART discontinuations, failure to remember (17%), too weak/sick (12%), travel (46%), and lack of transport to the clinic (16%) were frequently cited; reasons differed by gender.
  
  
  CONCLUSIONS
  The LTFU category comprises sizeable proportions of patients still taking ART that may potentially bias retention estimates and misdirect resources at the clinic and national levels if not properly accounted for. Clinics should consider further decentralization efforts, increasing drug allocations for frequent travels, and improving communication on patient transfers between clinics to increase retention and adherence.
authors.affiliation: The International Union Against Tuberculosis and Lung Disease, Paris, France ; Lighthouse Trust, Lilongwe, Malawi ; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
authors.forename: Hannock
authors.initials: H
authors.lastname: Tweya
authors.forename: Caryl
authors.initials: C
authors.lastname: Feldacker
authors.forename: Janne
authors.initials: J
authors.lastname: Estill
authors.forename: Andreas
authors.initials: A
authors.lastname: Jahn
authors.forename: Wingston
authors.initials: W
authors.lastname: Ng'ambi
authors.forename: Anne
authors.initials: A
authors.lastname: Ben-Smith
authors.forename: Olivia
authors.initials: O
authors.lastname: Keiser
authors.forename: Mphatso
authors.initials: M
authors.lastname: Bokosi
authors.forename: Matthias
authors.initials: M
authors.lastname: Egger
authors.forename: Colin
authors.initials: C
authors.lastname: Speight
authors.forename: Joe
authors.initials: J
authors.lastname: Gumulira
authors.forename: Sam
authors.initials: S
authors.lastname: Phiri
mesh_terms: D000293:Adolescent; D000328:Adult; D019380:Anti-HIV Agents / Q000627:therapeutic use*; D044966:Anti-Retroviral Agents / Q000627:therapeutic use*; D023241:Antiretroviral Therapy, Highly Active / Q000379:methods; D005260:Female; D015658:HIV Infections / Q000188:drug therapy*; D006801:Humans; D059012:Lost to Follow-Up; D008295:Malawi; D008297:Male; D008875:Middle Aged; D012189:Retrospective Studies; D055815:Young Adult
chemical_list: D019380:Anti-HIV Agents; D044966:Anti-Retroviral Agents